Mum is coming home

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Mum has lived with us, myself and 4 children for nearly 3 years after being unable to care for herself due to dementia, she has untill recently been quite active and had a good apetite, about 8 weeks ago she went into respite care for 2 weeks and had a fall there, she wa admitted to hospital and spent 2 weeks then 1 week in rehab before coming home, once home it was obvious to me that she had deteriorated very quickly whilst in hospital, she was now incontinent and anable to walk more than a few feet even with a frame, after 2 days at home i was concerned as she wasnt eating or drinking, the Dr came out and said she was fine, she continued to deteriorate each day and I requested a GP visit each day which was refused, on the Friday the carer from the agency wsa so concerned that she rang the out of hours dr service, they came out and admitted mum to hospital, she was dehydrated (as i had been telling them for 3 days) and had periphally shut down, anyway she has been in hospital for nearly 3 weeks now, I didnt visit for the first 10 + days as i just couldnt bring myself to, but have been visiting every day since, she is very poorly and wont drink or eat, although she takes a little yogurt from me, she is obviously very weak and has been given a drip at night due to low fluid intake, Today the hospital informed me that they have decided not to give her any more fluid via a drip as this is not helping her, or any other treatment, and that she will continue to deteriorate, they have said she may live for few days, weeks or even months depending on how she eats and drinks, I have decided that she will come home tomorrow as she wishes to be at home, I will get help from a care agency 3 times a day but otherwise care for her myself witha b it of help from friends and family, I was wondering if anyone else has experience of this and particularly how to support my children through this, It is mums wish to be at home, when i told her she could come home tomorrow she smiled and seemed so peacefull so i know i am doing the right thing for her, but i am worried about caring for her

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i do understand what you are saying but there is nothing the hospital can do for her that cant be done at home, she is dying and wants to die at home with people who love her, I want her to be as peacefull and content as possible for her last days, raher than being alone and unhappy in hospital, every time i see her she asks to come home and when i told her today that she could come home she smiled for the first time for days,

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As your Mum has been living with you then your children are totally aware and maybe being all together in familiar surroundings will help you all to say goodbye and comfort each other. It does sound ideal and I'm not saying not to do it. But moving someone so poorly can be difficult and distressing for all concerned. I suppose I an worried that you will be too caught up in the details of it all and sacrifice precious time just sitting with your Mum and letting her hear your voice and the voices of your children.
I sat with my Aunt last year when my Uncle was dying and we talked and talked about all our memories and what he meant to us..my Aunt is convinced he could hear us and that is a great comfort to her. I feel lucky that I was able to sit with my Uncle and share our love for him in his last hours.

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Now, if you looked at my past posts you'd see I'm definitely not someone who would say that people have to care until the bitter end, but what you're describing, which is in effect the sort of care that people might get from a hospice, sounds to me a wonderful gift for you to give to your mother. You're absolutely right that hospitals, after a certain point, can not provide the sort of care we'd all want for ourselves at the end of a long and fruitful life. It is a great pity that this sort of hospice care (in home or elsewhere) is not available as standard. What I would say to you is accept any help that is offered, and don't be shy about asking for more. It seems likely from what you say, that this will be for a finite period of time, although she may of course rally with her family around her. What ever happens, make sure you take care of yourself so that you can continue caring for her.

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Thankyou I understand what you mean but no one is getting any comfort with her being in hospital as she is so unhappy, i realise that moving her will not be easy, she will come home by ambulance, any time we have left at home will be very precious to us all and to her i am sure

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Now, if you looked at my past posts you'd see I'm definitely not someone who would say that people have to care until the bitter end, but what you're describing, which is in effect the sort of care that people might get from a hospice, sounds to me a wonderful gift for you to give to your mother. You're absolutely right that hospitals, after a certain point, can not provide the sort of care we'd all want for ourselves at the end of a long and fruitful life. It is a great pity that this sort of hospice care (in home or elsewhere) is not available as standard. What I would say to you is accept any help that is offered, and don't be shy about asking for more. It seems likely from what you say, that this will be for a finite period of time, although she may of course rally with her family around her. What ever happens, make sure you take care of yourself so that you can continue caring for her.

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Hello Jane, I think you are doing the right thing, as long as you have got enough support for yourself and also for your mum. You say your are 'getting carers in' but what about District nursing services? Has there been a formal assesment done as to what services you need to access, or have you just been left to 'get on with it'? If the latter, that is definitely out of order and not in anyone's interests. Do you have a palliative care service locally? They are usually attached to a local hospice but you could ring your local Primary Care Trust to find out who to speak to. My mum was visited by a palliative care nurse for anumber of months after her discharge from hospital last year and they were excellent: recommended a number of things which have really made my mum's life more restful.

Jennifer mentioned that 'she may of course rally round with her family around her'. Let's hope this is the case. It certainly is not always cut and dried that someone is terminal just because they give up eating for a while. I'm also assuming that the usual test for UTI has been done and excluded.
Kind regards, Deborah

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thanks everyone, just to update you i have phoned the hospital and she seems pleased to be coming home, although she forgets and needs reminding! the Rapid Assement team have been contacted and I have told them I want her to come home today and they are trying hard to get this organised so hopefully she will be home with us by tonight, I just feel like i want to go in and pick her up in my arms and bring her home, but I know i have to wait for all the proper procedures to be in place, Jane

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thanks everyone, just heard that she is definately coming home this evening and should arrive at about 7pm, apparently she is a bit brighter now she knows she is coming home and actually ate a chocolate mousse today! We have taken delivery of an all singing , all dancing electric hospital bed and have actualy been awarded continuing care for 4 visits a day for a month and then it will be reassessed. Her room is all ready and looking lovely, I brought some hyacinths in pots and a bunch of freesias as they smell nice, and a lovely soft fleecy cream blanket for her bed, so now I just have to wait for the ambulance to arrive with her, even the dogs are excited as they seem to know someting is happening, I know they will be so pleased to see her and she does realy love them, they are so theraputic and comforting for her and a bonus of this new bed is that it can be put down realy low so she will be able to stroke them easily, I expect the cat will sleep on her as she did last time and mum loved the fact that during the night she had the cat on her bed for company!

Im not expecting the next few days to be easy but I have good friends and neighbours and Mum deserves to be at home. I hope nobody minds but I will continue to post here as I am finding it realy helpfull to write things down and I have got a lot of strength from you over the last few hours. thanks, Jane

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Hi Janed
Just catching up with the threads after a few days of food poisoning! So sorry to hear about you mum and my thoughts and prayers are with you for the days ahead.
I can somewhat relate to your dilema - my dad was in the hospital for four months with a stroke before he died three years ago. They stopped giving him a drip etc and I couldn't understand because he couldn't drink and was dehydrated and you know the rest. He couldn't speak but so desperately tried to communicate that he wanted to come home and die. He was so disabled that we couldn't have taken care of him even with help and it broke all of our hearts. Knowing that you have a finite time with a loved one raises up a will deep within all of us that wants to pull out all the stops to make it as good as we can. Well done for taking that brave step - I am sure no matter how hard the next few weeks are you will find the inner strength to cope.
I chose to spend all day every day for a couple of months with dad in hosital caring for his needs which was the next best thing I could do. He eventually turned his face to the wall, refused to eat or drink, developed pneumonia and died within a week after him knowing that we couldn't take him home. He loved his home and would have done anything to be here for his last days. I was so sorry that we couldn't give him the desire of his heart.
I can see from the responses that everyone is with you in thought and willing you to get through this. I am sure there will be moments of joy to treasure in the midst of the time you have left together.
Blessings to you and your family and peace for your mum
Elspeth